Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.

Monday, January 24, 2011

another monday update

A list of updates:

Friday we spend the afternoon at the hospital. All 3 kiddos had their well-child-check-up with the pediatrician. Our usual pediatrician wasn't able to see Claire so we had a new one meet with us. I love questions like, "can you give me a brief medical history of Claire." Brief?... uh...there's not much brief about her history except that she's only 3 years old. "Is there anything you're currently concerned about?" ...uh...relatively no....I suppose. I mean yes, her liver numbers are up and that's a concern, but you're not really the one that makes any decision about that....so to save time, No. The fun of introducing Claire to a new doctor!

Mabel and Benson's apts were much quicker. And everyone is growing and developing right on. We finally did get a successful urine collection from Mabel and everything came back perfectly normal! Hooray! Benson got his "kindergarten" shots and Mabel her 2-month vaccines. Claire narrowly escaped with NOTHING!

Claire's liver numbers are still up. We're testing them again tomorrow and based on that, a possible liver biopsy towards the end of the week. Darn. I wish her cold would go away. We did do an ultrasound of the liver on Friday and things looked good there. I still think the numbers are up because of her cold, but it's obviously hard to know for sure without a biopsy. Hum.

Baby Annie's cough was cured today with a dose of bicarb-- a medicine Claire is very familiar with as she gets 4 doses of it herself every day. That Annie is the sickest, healthiest baby there every was!

One of Benson's and Claire's favorite bath game is to go on a band aid hunt. Every morning we still give Claire a shot of lovenox in her thigh or tummy to thin out her blood. We put a small, clear, plastic tegaderm/band aid on the injection site. They love to pull off one of Claire's band aids, let it loose in the water, and see who can find it first. Let's play "Hunter Band aid" they say! "Yeah! Yeah! I love hunter band aid!" And the best part is if they can't find it, they just pull another one off her tummy and look for that one! Never ending bath-time FUN!

I need to take some pictures!!
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1 comment:

Terry and Diana said...

I laughed out loud when I read about those kids hunting for the lost band aide. I could see them on a hunting expedition. And I know how much Benson likes that hunting game. I guess Claie is right behind him.

Sorry to hear about Claire's liver level. Hope everything turns out well.

January 26, 2011 at 8:01 PM

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